Total Parenteral Nutrition

Hi Guys,

First time post, so "Hellooo!".

I am just making a start on actually filling in my PIP form. As per the title, I am fed via a tube in my chest. It is connected to a rate limiting pump, connected/disconnected by visiting nurses twice a day (30mins AM, 45 mins PM), 6 days out of seven. I am also aware, that it is in the DWP guidance that I am unsuitable for assessment at a centre. Every cloud, I guess... But I have read a story of someone being invited into the centre.

My query is this: is there any further information I can find about how the DWP regard this? Any presumptions they make? Obviously, the assessment is how things affect you personally, but is there any internal guidance from the DWP or anything that might offer me some clues?

What can I expect from a home visit?

I have used all my google-fu skills, and I've largely drawn a blank, so any clues would be great.

Thanks

Thanks Gordon,

I have received my form, it has to be back by the end of next week. I have done quite a bit of research prior to asking for the form, so I am now just bringing it all together. The timing certainly isn't perfect, but it certainly isn't of my choosing.

Would it be worth highlighting my TPN treatment on the first page, and perhaps pointing out that because of it, I am unable to leave the house until at least 11am every morning as I am waiting for nurses to disconnect the equipment?

Is there any specific guidance for people on this type of treatment?

Thanks very much,

nwfb

Hi nwflyboy,
I care for my daughter who is on TPN, I do all the looking after her PICC line and what the nurses will do for you.
Do you have a PEG tube also? Then this requires a lot of looking after.
Anyway my daughter got a home visit without any problem not even a GP letter was needed. She was awarded enhanced rates for both indefinitely.
Hope you get a good result, it's awful not being able to eat or drink and being on TPN. Xxx

Carole,

Thank you for this. Sorry for the delay in getting back to you, I am used to getting notifications via email or something.

At least someone knows the problems I have! Thankfully, I do not have to manage a peg feed at the moment, though I have been fed via NG and NJ tubes in the past.

I am just going through everything in painful detail, describing how everything affects the different aspects of living.

How did you answer questions about needing someone with your daughter to get about about? I won't go out without relatives because the tube running from my rucksack to my main line (into the heart) is prone to being grabbed or caught on something. The unplanned removal of this line is life threatening hence I need someone to help me and keep an eye out. I am just not convinced this will convince them of the need.

Any pointers?

nwfb